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Does anyone with EDS have any places on their skin that is thick and not stretchy? The skin on the back of my hands is so tight that it splits open and bleeds with any hand movements. It is the exact opposite of the rest of my body’s EDS skin. The skin on the back of my hands can also turn bright red and it really hurts.
MJ
Ouch!If you find anything that helps let me know! My hands do this, due to my O/C hand washing and work(stylist).My daughter’s feet do this around the ankles and bottoms of her toes…we have been using lanolin and it is working for now. Nothing seems to work for more than a few months so I’m always looking for new!?
Hi mygirl. Thank you for your input. If I figure out what this is or find anything that helps, I will let you know!
MJ
The skin on the back of my hands is dry and my hands crack over the knuckle areas. Also, if I sleep with my fingers entwined it’s sore where each finger presses against the next. I don’t know if Diabetes Insipidus is involved, or Hypothyroid, or what. When they get particularly bad I slap the hand cream on at night and don a pair of white cotton gloves, to keep it contained and give my hands a ‘deep treatment’.
Your tough thickened skin areas could be a touch of scleroderma I suppose, some people have it to a mild degree. Just a thought.
Barbara
(UK)Thanks Barbara. Yes, I was thinking scleroderma as well. The skin is also cracked on my second set of knuckles as well, some splits are healing, some are scarred, and there are also fresh new splits with blood.
Scleroderma came to mind with me, too! This happens with no injury? YEEEOUCH. Many of us develop “shiny skin” and areas that appear to be sclerodermic type changes. Hmm. I think we’ll all be interested as to what your doctor says! Have you been to the dermatologist? Is this on both hands? 🙁
Yes, this happens with no injury. I am pretty sure it is Systemic Scleroderma… I’ve done a lot of research on the web since posting this. I will go to see my rheumatologist next week and keep you posted if I get diagnosed. I believe when my hands turned bright red, swell up, my veins distend like crazy – it is related to the scleroderma. I may have pulmonary hypertension secondary to scleroderma. This could be the cause of my shortness of breath and the Syncope, or the cause could be my indented spinal cord. Oh, and yes it’s is on both hands. The left hand is more severe than the right though.
Thanks Barbara. Yes, I was thinking scleroderma as well. The skin is also cracked on my second set of knuckles as well, some splits are healing, some are scarred, and there are also fresh new splits with blood.
MJ, Only because you mentioned difficulty breathing do I throw this out there, OK? You may want your doctor to consider dermatomyositis, too. Google can give you the basics. It’s another zebra that is not likely, but while they’re running blood tests, they may as well throw in a couple more! Will you keep us posted? Big hug…
Thank you for mentioning dermatomyositis Dr. Diana. I just did a lot of research and looked at a lot of pics and it could definitely be a fit. My other hand is starting to act up now. Usually the left one is the worst. Here are some better pictures of my scaly skin. Interesting… When the skin turns red and painful, that is when my heart starts pounding REALLY hard all over my body, my veins distend into ‘crazy veins’, I am SOB or shallow respiration, weak and cannot function. Any thoughts? The hardening of the skin seems to be progressing rather quickly. Should I be concerned?
My ankle bone is swollen; it is quite painful to have any pressure on it [like wearing boots]. Does anyone know if a swollen bone fits more with dermatomyositis or systemic sclerosis?
MJ, As far as concern, yes, please be concerned enough to be evaluated! Will you keep us posted? Hang in… 😉
I hear that udder cream really works well for very dry skin. I have been needing to get some but just haven’t felt well enough to hunt it down. If you do use this or any other heavy cream or lotion try putting it on right before bed and then putting on a pair of gloves overnight. I use white gloves like I wore in marching band or like the kind that Santa Clause wears.
I hear that udder cream really works well for very dry skin. I have been needing to get some but just haven’t felt well enough to hunt it down. If you do use this or any other heavy cream or lotion try putting it on right before bed and then putting on a pair of gloves overnight. I use white gloves like I wore in marching band or like the kind that Santa Clause wears.
Oooh, that cream sounds lovely! I think in MJ’s case, though, there is a systemic disease process going on that *really* needs to be evaluated. But for dryness? AWESOME. Time to pull out the marching band gloves! 😉
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